Re: your wonderful questions: My childhood was flooded with stories about my being too shy, too quiet, so "well-behaved," and--specifically, like at parent-teacher conferences--how I didn't ask enough questions. That last one is especially interesting to reflect on as my post-diagnosis image of myself expands: from a scared, anti-social little girl, to an undiagnosed autistic human whose quietness and lack of communication were not the problem, but the symptom of something primal being overlooked.
I feel sturdier as a result of all that, like I'm no longer looking at a cardboard cut-out of myself but a real creature.
Side note (and I almost didn't add this, but I think I will): When I envision being screened as a child with today's current understanding in mind, I feel nervous that my autism still wouldn't have been seen. I don't quite know what that means or where that feeling is coming from...maybe there's still some internalized ableism & stereotypes at play? Part of it might be that I just cannot unhook my understanding of my autism from my understanding of how I've masked it over the years, and so I just can't even imagine, like, an affirming and pre-masked assessment? I don't know, but there's something here I want to keep thinking about, and I'd be really curious to know if this is sparking anything for anyone else.
No wonder you are as soulful and creative as you are. 🥰 I imagine there was such a rich inner world happening behind what the world saw as a scared, shy, anti-social girl.
I was about to say "we would have been great friends" ... except we wouldn't have been, because we both would have been to shy to initiative with the other.
I love the way you slowed down to notice the stirring around "what if I was being assessed today." I think for me too -- I'm not sure it would have been obvious (likely depends on the assessor). I could imagine if I was a kid today I might walk away with OCD and social anxiety disorder. And you're right that is a complex truth to hold. For me it also taps into the "am I autistic enough to be part of this conversation". I often think I've long moved beyond that dynamic (every time I leave the house it is confirmed I am in fact Autistic enough), but there are pieces still there as I sit with this prompt you've shared.
Thirding these thoughts around assessment with the current criteria - both your thoughts, Sarah, about feeling like you'd still have found your way through that screen (me, too!), and Megan Anna - we have commiserated many times before and surely will again about how we can have our experiences, have our diagnoses, have all manner of information and validation and understanding, and still feel like counterfeit autists in the context of the broader community and discussion.
The ‘so well-behaved’ bit really hits, doesn’t it?
“Inability to read social cues” combines with “literal interpretation” to manifest as overcompensation - you see other kids misbehaving, but you can’t tell how much misbehaviour is acceptable, and so you never test rules/boundaries.
“Quiet, polite, and hardworking” should be a big, red, flashing arrow for an autism assessment, at this point.
Thank you for naming that, Sarah. Mine also wouldn't have been seen; and typing this sparks self-doubt, yet again.
However, I'd like to think that in a world where there is more awareness there's also more room for unmasking (or: where we don't need the mask in the first place). I am so grateful for discovering this topic when I did as it's also had a huge impact on my parenting.
As a kid I was seen as quiet, shy, intelligent, and a tomboy. I remember deciding at the beginning of fourth grade that I was going to be "perfect" at school that year. My teacher loved me!
What a tremendously wonderful video--thank you so much for sharing this, Megan Anna ! The "Common Experiences" list brought tears to my eyes; even though I'm diagnosed, I still find such immense validation in seeing things like this.
I'm so glad. And I think these common experiences are for all of us ... even after diagnosis, the experience of being missed (and hence misunderstood) still has it's print on us, I don't think that goes away after diagnosis.
While I think a lot of my childhood was, outwardly, more of an ADHD presentation that was ultimately kind of... excused/dismissed(?) because of my intelligence, what I now recognize as the autistic experience in my childhood was a lot of 'old for my age', special interests/info dumping, CONSTANT masking/camouflaging and being 'too sensitive'.
I now recognize 'too sensitive' to have been a broad umbrella that covered double empathy-related social struggles, difficulty with social cues and literal thinking that made 'taking the piss' style joking get interpreted as attacks, sensory issues, and general 2e-related traumatic invalidation, among a host of other things.
In hindsight - understanding neurodiversity and the double empathy problem sort of acts as a bit of a balm for some of those social struggles - I always felt like I could see that other people had a magnetism to them, that they were drawn together, and I never understood why I - a good person, a kind person, a thoughtful and creative person - didn't have that magnetic field, and always had the experience of being sort of an object without permanence, socially.
If I'm brutally honest, though - I don't know if the knowledge would have helped at that time - it feels like it would have been just a different flavour of the tearful conversations we have in our adolescence about how 'they just need to catch up to you - when they're older, they'll be better able to appreciate what you have to offer'. I knew my worth then, as I do now, but it's absofuckinglutely no consolation to a heartbroken 14 year old that all the humans you’re seeking connection with aren’t able to really see you.
The information may have broadened my understanding of my experience, but I don’t know that at the time that it would have made those social struggles less painful.
This made me feel some emotion ➡️ "I always felt like I could see that other people had a magnetism to them, that they were drawn together, and I never understood why I - a good person, a kind person, a thoughtful and creative person - didn't have that magnetic field."
For me too, this caused so much confusion. Why did I start out okay with the group but then they deepened and I was left on the outside looking?
And I agree, knowing this I don't think would have helped with the pain, and would have likely made me MORE self-conscious of the difference. I see this in my child. She knows this about herself, but I don't see it helping in regards to the pain. No lens or label — no matter how clarifying — can dull the sting of collecting a hundred splinters of "not belonging" each day.
Great video and even better conversation here. I love the thoughts and ideas and memories it's sparking. From the comments, it sounds like we could use a series about our inner children :)
Going back to a little undiagnosed Kendal is weird to think about I think that I would immediately be pegged as ADHD for sure. Since my family called me the caboose, since I was always the last one and still happens today. I would lose things constantly. I wouldn't answer when being called when I was doing something and even went as far as hearing exam to see if I was partially deaf. I had a speech impediment, but that didn't stop me from being super talkative to everyone around, talked to strangers often. My parents probably worried I would just walk off with one someday. Well, the big difference, I dressed and acted like a boy, unless you knew me you wouldn't think I was a girl. Even apparently asked Santa to make me a boy. I did none of the stereotypical things of what I was supposed to do. I played all the sports with the favorite being football which I eventually got to play the actual tackle football. I always knew I was different, different from my brother and sister which is still true today. I would have liked to know around 10 years old, I think thats when I would be able to understand myself better and when I really started to wonder why I was so different than the majority of the kids. Though I think after the hearing test, I probably would have been assessed. (ie last question)
So interesting reading this, I had a similar experience of gender growing up ... but then turned super feminine in high school as part of the mask. I love how precisely you know the age you would have liked to know.
Sometimes I wonder if knowing it would have made me more self-conscious in adolescence, I think I kind of brushed off my awkwardness, but if it had been loaded into a diagnosis I wonder if my younger self could have held that with more stigma. But then knowing why I didn't click with the other kids in the same way would have been helpful to some degree.
Also, I had forgotten that, but I think we spoke on it before (your hearing test), we had my daughter's hearing tested at 4 when she wasn't responding to her name ... came back normal and of course no one thought about autism.
First - I became girly in high school. Poor attempt honestly- my 9th grade school picture was wow... my friends literally treated me as Ken doll. Until college, when I was striving to be a hall prayer leader my RD called me in, and told me that I would never be one cause I act/look too gay, and girls would be nervous around me (Liberty University- christian college) and I was like well, fuck this. and shortly later, I had short hair like I preferred anyway. If people are going to assume that and im trying over here to be girly legit only for that reason (the amount of people that ask outright is staggering) then I'll dress as I prefer, comfortable and not in woman's (I'm designed to just be pretty and not functional/comfortable clothing) So thats where I am at - unmasking more, just live in sweats as much as possible.
It's the age that my niece is now, and im watching her grow up sooo much like me. This has been healing in ways and sad in others. While I would be no where as confident as her. I was starting to question why I didn't have any friends that were girls, why I was so different, and couldn't act human like I was supposed to be.
yep in the nook, I think one of our first interactions, at the very beginning of the nook. Between that time and now, apparently they do ask questions, about the why isn't the child responding if they can hear - I got selective hearing. Autism would have been much nicer.
Is the hearing thing considered a flag for autism specifically or also ADHD? Or phrased differently: what about it makes it an autistic experience/ how does it fit in? Is this monotropism / being focused on something else or is there another aspect to the experience?
I asked Google first but didn't stay long; you can imagine the kind of results that show up on the first page.
From what I hear not responding to your name is a red flag sign of autism, because of it being receptive language, hyper focus, and social communication. They will have to figure out why the child isn't, starting with a hearing test and when that comes back normal. They have to look for what's going on beneath the surface, is the child not understanding they are supposed to respond, it's a sign to look deeper.
the google thing, literally made me laugh out loud - I used the search as "why does my child not respond to their name, and their hearing test was normal" and it found me the answers. Megan Anna will probably do the better job at explaining.
Re: your wonderful questions: My childhood was flooded with stories about my being too shy, too quiet, so "well-behaved," and--specifically, like at parent-teacher conferences--how I didn't ask enough questions. That last one is especially interesting to reflect on as my post-diagnosis image of myself expands: from a scared, anti-social little girl, to an undiagnosed autistic human whose quietness and lack of communication were not the problem, but the symptom of something primal being overlooked.
I feel sturdier as a result of all that, like I'm no longer looking at a cardboard cut-out of myself but a real creature.
Side note (and I almost didn't add this, but I think I will): When I envision being screened as a child with today's current understanding in mind, I feel nervous that my autism still wouldn't have been seen. I don't quite know what that means or where that feeling is coming from...maybe there's still some internalized ableism & stereotypes at play? Part of it might be that I just cannot unhook my understanding of my autism from my understanding of how I've masked it over the years, and so I just can't even imagine, like, an affirming and pre-masked assessment? I don't know, but there's something here I want to keep thinking about, and I'd be really curious to know if this is sparking anything for anyone else.
No wonder you are as soulful and creative as you are. 🥰 I imagine there was such a rich inner world happening behind what the world saw as a scared, shy, anti-social girl.
I was about to say "we would have been great friends" ... except we wouldn't have been, because we both would have been to shy to initiative with the other.
I love the way you slowed down to notice the stirring around "what if I was being assessed today." I think for me too -- I'm not sure it would have been obvious (likely depends on the assessor). I could imagine if I was a kid today I might walk away with OCD and social anxiety disorder. And you're right that is a complex truth to hold. For me it also taps into the "am I autistic enough to be part of this conversation". I often think I've long moved beyond that dynamic (every time I leave the house it is confirmed I am in fact Autistic enough), but there are pieces still there as I sit with this prompt you've shared.
Secret great friends!!
Everything about this comment is so rich and validating. Thanks for holding space for these complex conversations.
Thirding these thoughts around assessment with the current criteria - both your thoughts, Sarah, about feeling like you'd still have found your way through that screen (me, too!), and Megan Anna - we have commiserated many times before and surely will again about how we can have our experiences, have our diagnoses, have all manner of information and validation and understanding, and still feel like counterfeit autists in the context of the broader community and discussion.
The ‘so well-behaved’ bit really hits, doesn’t it?
“Inability to read social cues” combines with “literal interpretation” to manifest as overcompensation - you see other kids misbehaving, but you can’t tell how much misbehaviour is acceptable, and so you never test rules/boundaries.
“Quiet, polite, and hardworking” should be a big, red, flashing arrow for an autism assessment, at this point.
Thank you for naming that, Sarah. Mine also wouldn't have been seen; and typing this sparks self-doubt, yet again.
However, I'd like to think that in a world where there is more awareness there's also more room for unmasking (or: where we don't need the mask in the first place). I am so grateful for discovering this topic when I did as it's also had a huge impact on my parenting.
As a kid I was seen as quiet, shy, intelligent, and a tomboy. I remember deciding at the beginning of fourth grade that I was going to be "perfect" at school that year. My teacher loved me!
✅ ✅ ✅ . I was all those things too. i also relate to the idea of "deciding to be/do something" and taking on that persona with full force!
What a tremendously wonderful video--thank you so much for sharing this, Megan Anna ! The "Common Experiences" list brought tears to my eyes; even though I'm diagnosed, I still find such immense validation in seeing things like this.
I'm so glad. And I think these common experiences are for all of us ... even after diagnosis, the experience of being missed (and hence misunderstood) still has it's print on us, I don't think that goes away after diagnosis.
Gawd, what a great point.
While I think a lot of my childhood was, outwardly, more of an ADHD presentation that was ultimately kind of... excused/dismissed(?) because of my intelligence, what I now recognize as the autistic experience in my childhood was a lot of 'old for my age', special interests/info dumping, CONSTANT masking/camouflaging and being 'too sensitive'.
I now recognize 'too sensitive' to have been a broad umbrella that covered double empathy-related social struggles, difficulty with social cues and literal thinking that made 'taking the piss' style joking get interpreted as attacks, sensory issues, and general 2e-related traumatic invalidation, among a host of other things.
In hindsight - understanding neurodiversity and the double empathy problem sort of acts as a bit of a balm for some of those social struggles - I always felt like I could see that other people had a magnetism to them, that they were drawn together, and I never understood why I - a good person, a kind person, a thoughtful and creative person - didn't have that magnetic field, and always had the experience of being sort of an object without permanence, socially.
If I'm brutally honest, though - I don't know if the knowledge would have helped at that time - it feels like it would have been just a different flavour of the tearful conversations we have in our adolescence about how 'they just need to catch up to you - when they're older, they'll be better able to appreciate what you have to offer'. I knew my worth then, as I do now, but it's absofuckinglutely no consolation to a heartbroken 14 year old that all the humans you’re seeking connection with aren’t able to really see you.
The information may have broadened my understanding of my experience, but I don’t know that at the time that it would have made those social struggles less painful.
This made me feel some emotion ➡️ "I always felt like I could see that other people had a magnetism to them, that they were drawn together, and I never understood why I - a good person, a kind person, a thoughtful and creative person - didn't have that magnetic field."
For me too, this caused so much confusion. Why did I start out okay with the group but then they deepened and I was left on the outside looking?
And I agree, knowing this I don't think would have helped with the pain, and would have likely made me MORE self-conscious of the difference. I see this in my child. She knows this about herself, but I don't see it helping in regards to the pain. No lens or label — no matter how clarifying — can dull the sting of collecting a hundred splinters of "not belonging" each day.
Great video and even better conversation here. I love the thoughts and ideas and memories it's sparking. From the comments, it sounds like we could use a series about our inner children :)
Going back to a little undiagnosed Kendal is weird to think about I think that I would immediately be pegged as ADHD for sure. Since my family called me the caboose, since I was always the last one and still happens today. I would lose things constantly. I wouldn't answer when being called when I was doing something and even went as far as hearing exam to see if I was partially deaf. I had a speech impediment, but that didn't stop me from being super talkative to everyone around, talked to strangers often. My parents probably worried I would just walk off with one someday. Well, the big difference, I dressed and acted like a boy, unless you knew me you wouldn't think I was a girl. Even apparently asked Santa to make me a boy. I did none of the stereotypical things of what I was supposed to do. I played all the sports with the favorite being football which I eventually got to play the actual tackle football. I always knew I was different, different from my brother and sister which is still true today. I would have liked to know around 10 years old, I think thats when I would be able to understand myself better and when I really started to wonder why I was so different than the majority of the kids. Though I think after the hearing test, I probably would have been assessed. (ie last question)
So interesting reading this, I had a similar experience of gender growing up ... but then turned super feminine in high school as part of the mask. I love how precisely you know the age you would have liked to know.
Sometimes I wonder if knowing it would have made me more self-conscious in adolescence, I think I kind of brushed off my awkwardness, but if it had been loaded into a diagnosis I wonder if my younger self could have held that with more stigma. But then knowing why I didn't click with the other kids in the same way would have been helpful to some degree.
Also, I had forgotten that, but I think we spoke on it before (your hearing test), we had my daughter's hearing tested at 4 when she wasn't responding to her name ... came back normal and of course no one thought about autism.
First - I became girly in high school. Poor attempt honestly- my 9th grade school picture was wow... my friends literally treated me as Ken doll. Until college, when I was striving to be a hall prayer leader my RD called me in, and told me that I would never be one cause I act/look too gay, and girls would be nervous around me (Liberty University- christian college) and I was like well, fuck this. and shortly later, I had short hair like I preferred anyway. If people are going to assume that and im trying over here to be girly legit only for that reason (the amount of people that ask outright is staggering) then I'll dress as I prefer, comfortable and not in woman's (I'm designed to just be pretty and not functional/comfortable clothing) So thats where I am at - unmasking more, just live in sweats as much as possible.
It's the age that my niece is now, and im watching her grow up sooo much like me. This has been healing in ways and sad in others. While I would be no where as confident as her. I was starting to question why I didn't have any friends that were girls, why I was so different, and couldn't act human like I was supposed to be.
yep in the nook, I think one of our first interactions, at the very beginning of the nook. Between that time and now, apparently they do ask questions, about the why isn't the child responding if they can hear - I got selective hearing. Autism would have been much nicer.
Is the hearing thing considered a flag for autism specifically or also ADHD? Or phrased differently: what about it makes it an autistic experience/ how does it fit in? Is this monotropism / being focused on something else or is there another aspect to the experience?
I asked Google first but didn't stay long; you can imagine the kind of results that show up on the first page.
From what I hear not responding to your name is a red flag sign of autism, because of it being receptive language, hyper focus, and social communication. They will have to figure out why the child isn't, starting with a hearing test and when that comes back normal. They have to look for what's going on beneath the surface, is the child not understanding they are supposed to respond, it's a sign to look deeper.
the google thing, literally made me laugh out loud - I used the search as "why does my child not respond to their name, and their hearing test was normal" and it found me the answers. Megan Anna will probably do the better job at explaining.